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Tuesday, May 13, 2014

Alzheimer’s Disease is at the center of Christoph Fischer's BRILLIANT new book ~ TIME TO LET GO ~

“The
Real Biddy Korhonen”

I
grew up with only a few friends and with two older siblings who were miles
ahead of me in their lives. My mother was a busy woman and so I spent a lot of
time at my aunt’s house. She had always wanted to have four children but lost
one child at birth. Her other three children were much older and didn’t need
her much anymore, so my visits to her house filled a gap for her, in the same
way as her attention to me filled a need in me. A match made in heaven.
Philomena, or Minna, as we called her, remained a source of happiness and
encouragement throughout my life. I was always welcome and treated like a
precious gift. She smoked, but she outlived both of her sisters (taken in their
40sby cancer).
In her late 70sMinna was diagnosed with
Alzheimer’s disease. Well, I thought, at least she lives, belittling her
misfortune without much awareness.
The next time I saw her, her trademark happiness however seemed far away. She
was crying bitterly because she had lost her hearing aid, a very expensive one,
too. Suddenly her life seemed to revolve around retrieving things. She was
spared the physical pain of her sisters, but she suffered severe mental
torture.
She fortunately reached a happier stage as medication and care helped reduce
the misery in her life, but the attention she needed was a huge toll to the
family. Despite her memory loss, she seemed to vaguely recognise me; me, the
‘child’ that lived abroad and who rarely came to visit. She had not lost her
warmth and happiness, or maybe she had just regained it after the bad patch I
mentioned earlier.
Very recently I saw her again, almost unrecognisable: withdrawn, very
unresponsive and almost reduced to basic functioning. Surprisingly, she could
still read and when I came to see her for a second time her eyes shone as if
she did recognise me. I spoke an emotional goodbye to her and her hand was
shaky and excited as she listened to my speech. She even responded by talking,
using words that didn’t fit exactly but which expressed an emotion similar to
what one would expect from a loving aunt in such a situation.
With her loving kindness in mind I created Biddy, the mother in “Time to let
Go”, a selfless, giving woman, who even in her illness manages to show her
innate kindness.I know it would be
wrong to praise her for a gift that many other patients do not have, through no
fault of their own. Losing one’s memory and control of one’s life is a terrible
thing that you can only understand when it happens to you.
“Time to Let Go” is partly meant as a tribute to my brave aunt and to the
wonderful people who help making her life dignified and as happy as is
possible.

***

Alzheimer’s
Disease

My
book is inspired by personal experiences with sufferers from the disease.
Nowadays, almost everyone knows someone who has relatives with Alzheimer’s Disease
and gradually stories and anecdotes about these patients have entered the
social dinner party circuit and become common knowledge.

Alzheimer’s
Disease is a dreadful disease that cannot be easily understood in its gravity
and the complex, frustrating and far reaching consequences for the victims and
their families. There are different stages of the disease as it progresses and
patients can move through them at different paces and in varying intensity. My
book does not attempt to be a complete representation or a manual of how to
deal with the disease. The illness affects every patient differently and there
are many stories to tell and many aspects to cover. I hope that I can bring
some of those issues to the surface and help to make the gravity of the disease
more prominent. I did, however, decide to stay firmly in fiction and family
drama territory, and not to write a dramatized documentary on the subject.

I
have witnessed several different approaches to handling the disease by both
individuals and entire families, and I have learned that the people involved in
every case needs to work out what is best for them. In my book, a family work out their particular
approach, which is right for them. They have different ideas about it and need
to battle it out. These clashes fascinated me and I felt they were worth
exploring.

Issues
of caring at home, mobile care assistance or institutionalising patients are
personal and, depending on where in the world you are, every family has very
different options or limitations. The ending in my book must be seen in that
context: as an individual ‘best’ solution that uniquely fits the Korhonen
family.

As point of first reference and for a more comprehensive and scientific
overview of information and help available I recommend: http://www.alzheimers.org.uk/ in the UK, and http://www.alz.org/ in the US.
There are support groups, helplines and many other sources available in most
countries. These will be able to advise specifically for each individual situation.

I can also recommend “Because We Care” by Fran Lewis. This fantastic book has a
comprehensive appendix with more or less everything you need to know about the
disease: Its stages, personal advice on caring, information, tools and help
available in the US.

For
consistency, I exclusively used material relating to a medium advanced stage of
the disease. To protect the privacy and dignity of the patients that inspired
the story I have altered all of the events and used both first and second hand
experiences and anecdotes. Nothing in this book has actually happened in that
way. Apart from some outer parallels between my characters and patients I
witnessed, any similarities with real people, alive or dead, are coincidental
and unintended.

*****

Airlines

The
airline plot is not based on any real incident but is inspired by my own
imagination. I used to work for an airline and so naturally, much of Hanna’s
life is based on my own experience of 15 years flying. I lived with the
awareness that every time a call bell goes off on a plane this could be a
matter of life and death. What happens to Hanna in the book has never happened
to me or anyone close to me. My flying life was not that extraordinary.
Fortunately.
But every year airline crew are retrained in emergency procedures and aviation
medicine, and at least during those intense yearly re-training sessions your
mind cannot help considering the possibilities of such events.
The modern trend of the ‘suing- and compensation-culture’ and the extent of it
in some cases worries me a little, which is why some of that concern found its
way into the book.
The lifestyle of cabin crew and pilots is often falsely glorified as a
glamorous string of free holidays and leisure. A recent crew strike in the UK
has brought the profession into disrepute in the media, as fat cats and lazy
bones. My book aims to shed a bit of light on the realities of flying. I
enjoyed the life and would not want to miss the experience but it is a tough
life that demands huge personal sacrifices and flexibility, sleep deprivation
on a massive scale and exposure to aggressive and abusive behaviour by a
consumerist clientele. In the global trend of cost cutting, salaries are going
down and what used to be a career is at risk of becoming a minimum wage job
handed to people who have no experience and who have no incentive to give it
their all.
My book is a tribute to my former colleagues in the airline industry, who, in
my opinion, are unsung heroes and a bunch of wonderful, hard-working and very
caring people.

*****

Memory

What makes Alzheimer’s so terrible? What is it that makes a memory so important
to one’s life that people compare its horrors to pain-inflicting diseases like
cancer? You are alive and physically well, you eat and function as a human, but
as an Alzheimer’s Disease patient you are bound to be suffering, frustrated,
depressed and unhappy.
Of course it is ridiculous to compare the two diseases, but while a cancer
patient has still their awareness and choices, the Alzheimer’s Disease sufferer
is losing the core of their being, everything they ever were.
How can you define yourself if you cannot remember? You have had children, but
you won’t recognise them. You won awards, had a successful career, made people
happy, but you don’t know any of it. Who are you and what are you doing on the
planet? Who are the people around you? As the disease progresses, these things
become more intense and you can live in a mental prison of fear and
disorientation. Your brain won’t do as you want it to. The fear of losing ‘it’
altogether, for some is impossible to bear. You are about to lose everything
that was ever precious to you.
That thought is frightening to all of us. It can happen to all of us. The worst
stage seems to be when patients still notice that something is wrong. We all
know how annoying it is when we just put something down and don’t remember
where. Imagine that happening to you all the time, every day, and you get an
idea of how it might feel.The carers
see their loved ones slowly drift away into a stranger.

Biddy’s
husband Walter in my novel becomes obsessed with preserving memories – his own
and others. He begins to write a family chronicle as a constructive outlet for
his fears. He is an important character with his musings about preserving
knowledge, memories and facts and he allowed me to bring in thoughts about the
disease on a different and more reflective level.

I hope that I have managed to write about more
than just the clinical side of the disease. I stuck to the early stages of
Alzheimer’s Disease in the story because it gave me the best opportunities to
work these thoughts into the story. It allows me to look back at Biddy’s past
but with still a lot of hope.